The thoughts of a nurse with type 1 diabetes

Menu

During some of the most exciting (so far 😉) times in my career I have been working on doing new things, creating new solutions and developing new approaches – setting up a new complaints service, being part of a team developing a new NHS Direct site and developing the national Summary Care Record. I might reflect that some of these were not as successful as I might have wanted, but they were all exciting projects to be part of. What drove me, in all those projects, was the opportunity to try to make something better, to deliver better care, to find new ways to help people get information, to make information more accessible, so that it improved outcomes – laudable goals.

At the time of these projects we didn’t really talk about digital, nor digital transformation. We were just focussed on trying to solve a problem and technology happened to be part of solution. More recently there seems to be a whole new language developing focusing on digital transformation – for me this is missing the point.

I have long thought that the annex that is the informatics department would do well to move nearer to the point of care and be part of it, rather than a separate, specialist environment. Instead the informatics world has developed its own language which is impenetrable unless you have a qualification in computer science or similar. Don’t get me wrong, I don’t want to dumb down health informatics, but I think those specialists would do well to get closer to the language of health care delivery.

What could ‘digital transformation’ be called?

The specialists in informatics might do well to use the language of safety; patient safety is the avoidance of unintended or unexpected harm to people during the provision of health care. Care providers would recognise this language and understand the intent. It is generally what informatics specialists are aiming at too.

For me the language of improvement is a way of connecting to health and care staff who are not specialists. Improving quality is now well recognised as key for high performing NHS organisations.

If Digital Transformation was described as projects that aimed to improve quality and the language of quality improvements used, I feel sure it would resonate more clearly with staff and service users.

As someone who likes frameworks, I developed and used a variation of the IHI Triple Aim when I thought about what we were trying to achieve, in any project.

Digital projects should always be focused on:

improving outcomes,

creating efficiencies, and;

improving the experience of both staff and/or service users.

Projects should be able to show how they improved all the areas of my adapted triple aim.

We need to stop talking about digital transformation as an thing in its own right and use language that resonates with staff who are working at the point of care. I recommend the language and aims of quality or service improvement.

I know that’s what we all want, but we need to get our lexicon right. Surely we all just want to make things better?

It has taken me a long while to pluck up the courage to write this blog. It’s sensitive, for lots of reasons. It’s about my relationship with a very close friend who happens to have Bipolar disorder.

We have been friends for decades; we have many shared memories, most of them great or good. My friend has a great sense of humour and can make me laugh – proper belly laughs, where I can hardly breathe. We have been on holiday together and once shared a strong social network. Our families were close too. But we haven’t laughed like this in a long time.

Bipolar had already thrown this family some challenges and we have had experiences of both mania and severe depression.

Life can be cruel; a bereavement took my friend into a manic phase. Unlike in the past, they had no one to help to counter-balance some of their more destructive behaviours. At the start of this episode I tried to help but there was no talking to them. They could be mean and did some not so nice things to other friends. A couple of us tried to get mental health services involved but my friend was having none of it and gradually I came to realise that I needed to back off, that nothing I could do was going to change what was happening.

A couple of years went by. I stayed in touch with my friend’s son and offered him support where I could. My friend systematically went about destroying much of their social network. They spent lots of time with people who perhaps were less good for them. Eventually my friend’s son got in touch to ask if I would go see my friend, as things had changed.

My friend has long swings of mood, lasting months, and by now was not taking any medication and was on downward path towards a deep depression. They had moved into a new house and although they had been there for months it looked like they had moved in the day before, with packing boxes everywhere and little that was recognisable as their home. They had lost lots of weight and were not eating properly.

What has followed is the reason for writing this blog: I have been visiting every week now for almost two years. It feels relentless. There is no longer any laughter and the visits can be quite functional where I do a small amount of cleaning or changing the bed. There is no joy in this process at all. It is devoid of most of the things that made this a great relationship. We have had episodes where my friend has told lies to avoid seeing me, where they have sat for long periods and barely spoke. The house still looks barely inhabited and my friend is eating a poor diet and has questionable personal hygiene.

This is not about blame – I know my friend is has a complex mental health condition. Nor is it about looking for plaudits. But it is joyless being a friend in these circumstances. We discovered they hadn’t been taking their medicines recently and we have had to step up the care, working with the mental health team. It’s hard feeling the need to ask your friend if they feel like they might take their own life. It’s a gruelling endurance test of a friendship.

The feeling of hopelessness and lack of joy in what had been a great friendship is difficult and I understand why many people walk away. There is almost a sense of bereavement on my part – I had lost a friend who was important to me. There doesn’t seem to be much online about this, about the challenge of friendship in these types of circumstances but I am sure many people will recognise my descriptions.

So, what to do about this? The most important thing is to make sure that you look after yourself. I am lucky; I have a loving partner, a fulfilling life and cats and hens – they help me to stay resilient. I do what I can, but I don’t feel guilty because I can’t do more. Friends and family of people with long term mental health problems need to understand it’s a marathon not a sprint and be prepared for a difficult journey on some occasions.

But! There is a tiny light at the end of the tunnel; I can see it flickering. Its not very strong yet but I feel optimistic. It’s still hard though, as there are still down days, and there is still a long way to go. I sense we are on the upward curve and am prepared for all the things that it will mean.

If you are close to someone like this, I send you warm wishes of love and strength. It’s a long and arduous journey, as you know, but love and compassion must be at the heart of it. Stay well and look after yourself, it can be a long road.

I say to my friend that we will laugh again soon and I hope it’s the sort of laughter where I can barely breathe and where I snort my cup of tea. That day will be here soon, I hope.

If this blog affects you personally, there are resources here and here that may help.

I am, apparently, known for my directness. I would like to think that I was just a straightforward northern lass and, as they say where I come from, ‘Shy bairns get nowt’ (for the meaning click here , I guess you are not from the north east of England 😉 ). Other ways people describe me; ‘calls a spade, a spade’. So far so good, I guess that means that people are likely to trust where I am coming from. I certainly try to do my best to speak truths and where I can ‘speak truth to power’.

But I do wonder whether that means you have nowhere to go. What I mean is, is it like swearing all the time, you know where the shock value wears off? I have been shouting out as loudly and clearly as I can for more than a decade about several issues relating to my work and other parts of my life. For example, speaking up to senior nurses about the inexorable march of technology and its impact on nursing. I don’t think I have ever been slow to speak out and often publicly too. Yet I don’t always feel people are listening.

Sometimes it works, and people listen. If you can match your voice to their ear, if you can get them to listen, really listen, to what you have to say, sometimes, sometimes you can change things.

But what happens when it doesn’t? You know what I mean, when you have said it so many times and in so many different ways that you feel like a broken record. You have reframed it as many ways as your imagination will allow you to. When you have written about it, performed it, sung it and practically modern danced it….. What do you do? Do you accept you must be wrong and move on?

I call this ‘Giving Up’ and I am not sure its part of my character. I must be one of those irritating people who continues with the same theme over and over.

I found myself shutting myself down a while ago on social media. I felt my voice was changing and I was stepping into stridency. But I have been reflecting that perhaps stridency has an undeserved poor reputation and stridency in relation to women certainly has; we are sometimes condemned for speaking in a higher pitched way than our male counterparts and sometimes described as shrill and screechy.

When I found myself being strident that is exactly what I wanted to achieve; I wanted to make some people feel uncomfortable. Is that so wrong? There are times when people have said things to me that have made me uncomfortable and almost always they have led to periods of healthy reflection. Why should occasional stridency not achieve that?

I’ve reflected that, so long as stridency means that someone is making their feelings about something known in a very strong and direct way, as long as its not personally directed, or unkind, what the hell is wrong with that?

Most of you will have been in this situation…. picture the scene…. you are at a social event and making small talk with people you don’t know. Someone asks you ‘What you do?’ – How do you reply?

My response most often is that I am a nurse and my friends often reply with a similar answer relating to their job or career. It can be described as social identity or cultural identity relating to the roles that you play in your life. So, what happens when you are no longer playing that role as a major part of your life, how then do you view yourself?

I recently left my long-term career in the NHS as a nurse. I am finding the transition tricky and I think this is because my social identity and personal identity are tightly bound together. I find it hard to say I am ‘retired’ partly because it acknowledges a loss of the social identity that I hold so close. Plus, the fact is, I am still working, but not in the same way and not in the type of role I held for decades. I see ‘retirement’ as something my parents and grandparents did when they completely ceased working and think that this just doesn’t fit me! They seemed so ‘old’ too, much older than I feel.

So how does it feel? It is sort of an identity crisis. I am having to think carefully about why I feel the way I do. I feel the need to strengthen other aspects of my identity and I am doing this through reconnecting with old hobbies and looking at starting new ones. Some of this was planned but some was not. My new little flock of hens was very much planned but some of my volunteering was not but I am enjoying them all and have more plans in the pipeline including learning to bake some amazing bread. – it’s helping.

I also recognise an amazing freedom where I can make different choices; exactly who do I want to work with now and do our values align. I am choosing in different ways that feel more aligned to my preferences – because I can! Sometimes it feels incredibly liberating but can also be very scary and lonely. Unlike most of my working life there is no one to turn to, no work friends who are sat at the close next desk, many of whom I became incredibly close to. The good thing about those people is that most of them are still there and many are very happy to meet socially and have coffee and sometimes more – we have been known to imbibe other fluids! I hope I would be there for them too.

What I did find slightly disconcerting at first was several people who I thought were great work colleagues clearly only saw me as my work role alone. I knew this would happen with some people, but I was surprised who behaved like this. It is as if Anne, who was the Chief Nurse, is no longer of any consequence. I hope I have never viewed people like this and nor would I treat them in the same way!

So, how will I answer the question now? What do I do? I dislike the ‘portfolio career’ cop-out. So, I am going to take a lesson out of my husband’s book. Ask him what he does, and he is likely to say: ‘I am a musician, a maker of costumes, a learner of new things and I make great pasta!’ How will you answer when someone next asks you ‘And what do you do?’

It’s a big deal. I have worked in the NHS since 31st January 1983, when I first started my nurse training. I have also been in a salaried role since I was 16 years old. I have never had a sabbatical and only took 14 weeks off work when I had my son, returning and expressing milk everyday on the midwifery unit at the hospital where I worked so I could continue to give my son breast milk. I have worked hard, chosen difficult roles and never been afraid to volunteer or do extra.

I have some regrets. It was impossible to stay at the bedside back then and influence things at a more senior level. I am of the ‘Management Generation’, where nurses moved in to management if they wanted to be involved in a wider range of things and, as I saw it, have an influence on how things were ‘done’ for patients. There are lots of my generation like this. It’s sad because we are castigated for not staying at the bedside and, as I have said in blogs previously, accused of selling our souls. I was ambitious but all I ever wanted to do was make the biggest difference I could. I also know I was a good bedside nurse, because patients often told me.

I hope I have made some difference. In the last three decades I have always done new jobs; a complaints manager before there were any, setting up NHS Direct, moving into nursing/clinical informatics. That’s one of the reasons its been hard; being one of the first is often harder than following someone else. I have given as much support and help to others as I can, even when it was difficult.

Now those times are finished, and I have set myself adrift.

I no longer have a ‘proper’ job and for someone like me that is a big deal. I think I probably have around 10 more years of career left, at 55 that seems reasonable. I am fed up of being a slave to a job, although I have been very lucky in the roles I have had. My ex-boss says I had earned autonomy (I think he means he never really knew where I was or what I was doing!!) but clearly, I still needed to deliver what the organisation was paying me to do. I loved my job, but the timing was right to go; plus, its someone else’s turn to do something with the role. I don’t want to be the person everyone wishes would get out of the way!

So, I am forging out a new path and I am discovering the things that seem to be the things that make me ‘tick’. I want to rediscover my voice and use it well. I am increasingly interested in the experience of patients and how we make sure their voices are heard, especially in the digital space. I haven’t finished in informatics yet where, in particular, I would like to do something about the gender divide. Its better than it was 20 years ago but I still feel that we have some way to go.

It appears that I need a cause, something to drive me on, so that’s what I am focusing on doing – working out what makes me tick.

I will be doing some work to keep the wolves at bay and feed my family. As is usual with me though its far from straight forward. So the trendy way of describing this is a portfolio career.

I will do a small amount of independent work.

I have also decided to join a tiny (a small number of staff compared to NHS Digital) fledgling social enterprise called Ethical Healthcare Consulting. Why would I want to take huge sums of money from the NHS, working as a consultant? The NHS that has fed me, paid for my house and educated me in the last decades? This way, as part of a community interest company we can aim to try to put something back and to do some good, whilst bringing our expertise back to the NHS and without making huge profits. I see us as sitting just outside and alongside the NHS in values and ambitions.

I will also be working with the glorious mHabitat team and trying to help the Leeds Care Record team to deliver the Person Held Record WITH the people of Leeds.

What else, I am not so sure. The diary isn’t full but that is perhaps good for now. There is a house to reclaim as mine, new chickens to bring to the garden. There are books to read and blogs to write. I have never had a greenhouse and I want to grow tomatoes and blooms like my Granddad did.

After 34 years I can still remember her. Why is it that some people we care for seem to make an indelible mark on our memory?

She was the wife of a patient. I worked in Scarborough so lots of older people came on holiday, lots and lots of them; seeking sunshine, the Spa and the long line of slot machines, ice cream and bingo on the front. They came in droves when the sun came out, despite the continued chill of the North Sea. Of course some of them became unwell.

He had chest pain. An older gentleman. He was tall, upright and smart.

She in contrast was tiny, like a little bird. I can’t remember where she came from but she had a strong accent, possibly Eastern European. She seemed very exotic.

I was a nearly qualified third year student, close to my finals and, as a result, was allowed to work on the three bedded coronary care unit that was part of the male medical ward.

I was always wary of getting too close to families but she was all alone. No family nearby. No other visitors but her. It was before open visiting but we used to let her come and go.

She seemed to take a shine to me. She used to chat ten to the dozen and sometimes I just couldn’t keep up.

Eventually their hotel or b&b booking must have finished because she moved into a room we had for relatives. She asked me daily to go and have tea with her. She wanted to read my tea leaves! I wasn’t sure about this at all!

Eventually I relented and we had tea. She tipped my china tea cup up and looked inside.

She said: I see a place, it’s name starts with ‘L’, I can see money, not riches but enough. She looked up at me, with pale blue eyes and said I can see a tall dark stranger and you will marry him within the year. I thought she was so sweet; I hugged her and went off to my early shift. I also thought she was a little bit strange and had a little laugh to myself!

Eventually they went home together. He recovered and I hope he did well.

The other girls had quite a laugh at her predictions. I had no boyfriend and what place started with an ‘L’?

18 months later, I was married to my now husband and living in a little tiny house – 10 Leeds Road. I smile now. Perhaps my memory has gone awry!

One of the best things about nursing are those people we are lucky enough to meet along the way. We are part of some of the most difficult parts of their lives and we must leave our own marks on their memories but they leave their indelible marks on us too.

For the last decade, or so it seems, in my professional technology life, we have been talking about the holy grail of interoperability. So, what on earth does that mean? I’m basically a non-techie and my understanding of interoperability is that we can send information around the system, from one place to another, and when it sets off it doesn’t lose any meaning as its transferred and arrives with its meaning intact. In other words, the information is available and understood by the person that receives it and this is as the sender intended. Standards are key to making this happen and at last this is starting to happen. Have a look at the PRSB and Interopen.
Wow, I mean that means we can share information using standards and free up information that have traditionally been effectively locked behind electronic walls.

Freeing up information to flow around the system comes with some issues and in our endeavours to make it flow I am not sure we have thought through some of the consequences of all this data arriving at the point of care, in a multi-professional context, that centres around the care of an individual person.

Back in the olden days, when I was a ward sister and subsequently investigating complaints, I was often faced with large piles of paper notes about an individual patient. They were hard to plough through. There were some tricks that everyone used to use to get to the essence of what had been happening to a patient. At the back of the notes there were, usually in reverse date order, a set of correspondence between different doctors; an admission referral, a discharge summary, letters from clinic and so it went on. That’s where you started to get the best picture, a timeline, of what had been going on.

I know that we are working on standards that provide similar summaries of episodes of care which is brilliant. They will provide a much-needed way of navigating a person’s care in a timeline.

The challenge comes for those areas and professions who may be less practiced and used to summarisation; nursing for example.There is a risk that all this machine processable information will flow into records (maybe alongside information sent by patients too) and we won’t be able to see the wood for the trees! Imagine if you had to review every piece of information in one of those fat sets of paper notes and you were on a busy MAU. It will be like the quote from Mitchell Kapor: ‘Getting information of the internet is like drinking from a fire hydrant’. How will we ever know what is important and what can be left?
Some professionals already have solved this problem or at least started to do so. GPs, the most experienced Health Care Professionals in using electronic records, already understand the value of summaries and lists but these operate in one environment only.

How are we going to prevent this information that will be flowing around systems becoming overwhelming? How will we make it so that clinical staff do not feel the need to review every piece of information? Where will we stand if we fail to review once piece of information amongst the many?

It seems to me that we might need to think about a longitudinal record for a citizen and stop seeing records as a patchwork of systems connected by standards. If we fail to summarise, to prioritise, and to recognise that everyone can’t read everything, how are we going to sort out the most useful information from the most mundane? How can machine processing help us (or can it)? How will we share the piles of data across all the professions?

What I do know is that this affects the way nurses and probably others need to think about the way we keep records. If we don’t we will drown in a deluge of electronic information and potentially be no better off than we are today.

Perhaps we can just let the citizen take responsibility for the timeline? But that probably won’t work for everyone.